"Vulnerable" is not a word I have ever applied to myself. A stoic Scot, I have always chopped my own wood, carried my own water, and been able to make my own way. Not that I'm superhuman, I don't like to ask for help. If there is one thing I have learned over the last two years, it is to ask for help. Well I thought I had. It turns out though that I still struggle with it. And that it is a lesson that I still need to learn.
So texting my son and asking if he was willing to pick up some groceries for me was a lesson in humility. When he said yes, I sat down to make a list. How do I explain to him all the little things about fruit and seasons and price that guide my purchases. Finally I had to say "Surprise me. This is generally what I need but do what you think is right." When the Granny Smith apples rolled out of the bag and I started to complain that I couldn't eat those. Sandy grinned and said, "I knew it. Here I am doing a favor and all you can do is bitch." Yeah I apologized. And yeah I ate the apples and I loved them. Turned out they were actually Chelan and not nearly as sour as I remembered Granny Smith as being.
But I'm an introvert. So when people ask me how I'm doing in the midst of this pandemic lockdown. "I'm fine." rolls out pretty easily and pretty sincerely. For the last two years I've handled my own time pretty well. Early in this crisis, I knew that getting good sleep, good exercise, and eating well would maintain my health. As a freelancer, my time has always been my own to manage and I figured out how to do that. This lockdown wasn't that much different. Some people would laugh at me and call me a creature of habit. But today I have an easy time knowing what day it is and maintaining a schedule. And it is that routine that keeps me sane in a world that seems to be going insane.
So I'm reaching out from my healthy place. Connecting people, following up with people that I know are at risk of picking up old bad habits. Strengthening friendships and enjoying the busyness of my days.
As the lockdown rolled out, I realized that virtual connections would be important in the time of covid19. I set up a trial afternoon Zoom connection with my two techno-brothers, Ed and Drew. They spent a few minutes fumbling with the technology and then got into geek mode. One connecting with his ipad while still on his laptop through a satellite connection and the other connecting his Pixel phone as well. And then virtual backgrounds. And all the little joys of how to make it secure. Fun and confidence building.
When the AlAnon group decided to try it. I was able to help many connect and help them navigate the shoals of security safely. Next came the church groups, Men's Bible Study, and Sunday School. And my Drupal coffee group. And the community mentors. And a coffee hour with my Canadian church friends. Eventually I even managed to host my family on Easter. Oh and fit in there all the lung cancer groups.
I discovered, as many people are, that zoom burnout is real. A little research led me to realize that there were some some simple skills that could help. Recognize that it is a new mental muscle. Learn to follow a conversation broken up by the vagaries of technology. Read 2-dimensional body language as opposed to the usual 3-dimensions we have in real life. Recognize that the signals of emotion may be more subtle than we are used to. Stepping back and taking time to reflect, feel the emotion. I found being grounded to be helpful. By praying and meditating for a few moments before charging into the ethereal world of Zoom, I'm ready.
Make no mistake, technology is no replacement for face-to-face interaction. One lady wondered if the group would fall into the same easy banter that we had when we met face to face. We did, making allowances for some awkward pauses when people talk over each other. And the laughter. We learn to mute mikes. And we recognize unmuting as someone wanting to talk. It all becomes second nature quickly. For some people this is the only contact they have with friends. They aren't seeing their co-workers, their family is distant, and they live alone. I sense that for them, it is a lifeline. And it has been a true blessing for me to be the thrower of that line.
CancerConnections.ca continues to be a huge part of my life. I enjoy helping people navigate this pandemic. Many people have lost access to their regular support groups. My interest is shifting from the practical day to day help with side effects to larger questions of "why me?" and "what is the sense?" Many younger folk are dealing with a parent's cancer diagnosis. Now they become caregivers for aging parents. They have always been the support recipient and now they are the ones having to support. As many patients approach the end of life, death challenges them. For them knowing what to say and how to have the "difficult conversations" is hard. As a patient myself and as a caregiver to Yvette I have some unique insights. With that comes a newfound desire to encourage people to talk about hard things.
Before all this craziness started I made a deal with a friend who is a KonMari consultant. Marie Kondo is famous for her book, "Tidying Up." She would help me move out of "hoarder mode" and I would help her with some marketing. As the date approached, I reached out expecting to have the help cancelled. But no. She wanted to see if she could do it without being physically present. So Zoom, pictures, texts and phone conversations it is. We have had three sessions now and it is amazing. The method distinguishes itself by engaging emotion in a positive way, "Sparking Joy." The process begins by discarding everything. Then you retrieve the things that spark joy.
We began with books though the process usually begins with clothing. I gathered all the books on the kitchen floor. The second step began by thanking them for the wisdom and joy that they have brought into my life. Then picking up each book, without opening it, I tried to sense if it sparked joy. It was a struggle at first. The temptation to open books was mighty. But pressing on, it became easier and easier. By the end of the process I had about three quarters of a book shelf that I wanted to keep. As I did the final part of the process in organizing them, I felt a lightness of spirit that surprised me.
My books have become usable again. I find myself reaching for art and poetry books and other resources that I knew I had but could never lay my hands on. It was different when a Facebook friend posted bird pictures from her trip to Costa Rica. I reached for my Panamanian bird book to identify them for her. When a word came up in my Sunday School class, I reached for my Reader's Greek New Testament to define the word in Greek. And when I saw a line from a Marge Piercy poem I was able to find the whole thing in her book.
Now we have done papers (I know exactly where my birth certificate is) and clothing. While papers was pretty tedious, clothing was surprisingly gentle. We added linens to make a clean sweep of my closet. I will continue to roll my socks. (Kondo thinks socks should be folded.) I learned some interesting ways to organize blankets and by the way "how many towels do you really need?" The whole process so far has left me feeling encouraged and excited. We still have some major categories to tackle. The stuff that moved from my apartment to storage until I can discard it is still pretty major. But there has been a joy in tackling this project that has already exceeded my expectations.
Since the focus of this journey blog is my travels with cancer, I suppose I should update you on that. I'm on my way this week to have the bubble in my lungs checked out by a CT scan. By all reports, BC is a world leader in dealing with coronavirus. I have very little concern about going to the hospital and getting the work done.
My battle for osimeritinib (Tagrisso) continues. I finally received an overdue response from the Patient Care Quality Office (PCQO.) They have continued to deny me access and provided very vague reasons why. I have passed the information along to both the drug company and the federal drug review board. I'm asking for clarification on studies and language that are only alluded to in the letter. I'm continuing the advocacy but am also accepting that this I"m going to be on my current drug for awhile.
Some of my cancerconnections.ca acquaintances died in the last few weeks. Not because of covid19 yet. But it is a reminder that life comes to an end. As I read a few days ago in Psalms, the ancient writing encouraged me that throughout this there is a sanity that pervades it all. Psalm 30: 8 -12 says:
I called out to you, God;
I laid my case before you:
“Can you sell me for a profit when I’m dead?
auction me off at a cemetery yard sale?
When I’m ‘dust to dust’ my songs
and stories of you won’t sell.
So listen! and be kind!
Help me out of this!”You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.
As we struggle with our isolation, with the lack of physical contact, with the failure of our routines, God who listens comforts us. He turns our wild lament to true joy.
As always, thank you for your prayers and support in these difficult times.